W.I.R.C.

#WIRCforRare

WE VALUE:

OUR GOALS ARE TO:

RESEARCH PROGRAM GUIDELINES:

GRANT PROGRAM GUIDELINES:

Accurately diagnose patients suspected of having a rare genetic condition.

Identify effective treatment options and regimens for the diagnosed rare disease patient with an open mind to all scientific and medical philosophies.

Manage all diagnosed rare disease patients that do not have access to treatment/management at an established disease-specific center of excellence.

Provide assistance to NIH’s Undiagnosed Diseases Program (UDP) in order to avoid another backlog situation. Last year, the UDP stopped accepting patient applications in order to catch up with a backlog. While the program is now evaluating new cases, W.I.R.C. will provide patients with an alternative option to obtain the initiation of a diagnostic investigation by a team of qualified healthcare professionals either while they wait for their patient UDP application to be approved and/or should their application be denied. The UDP is a 4-year old program that has seen about 500 patients and has succeeded in making a full diagnosis of a genetic disease for about 10% of patients and a partial diagnosis for about 30%. The team at W.I.R.C. plans to assist the UDP program through positive collaborations aimed at increasing the UDP’s diagnostic rate and at assisting in the discovery of new diseases and disease mechanisms.

Establish an educational rare disease series introducing one rare genetic condition, disease and/or syndrome at a time, on a regular basis, specifically tailored to clinical professionals. While these classes will be open to all healthcare, clinical and medical professionals, those working out of W.I.R.C. will have a mandatory monthly minimum in order to remain in compliance with EDSers United’s standards.

Deliver comprehensive patient outcome-oriented care.

Contribute to the physical, psychological, social, emotional wellbeing of the patients, their families, and the rare disease community.